A Story Going Back 26 years, PND and a Sudden Death (Trigger Warning)

MBU

For UK Maternal Mental Health Matters Awareness Week 2019Welsh Mummy Blogs will be sharing perinatal mental health stories from Wales. We hope that in doing this, we can highlight the need for a specialist mother and baby unit in Wales. Today’s story focuses on Postnatal Depression (PND.)

Today I share a story bravely written by Ann Harrison-Power. This story dates back 26 years. Ann had trouble conceiving a child due to endometriosis, she feared she would never become a mum but a surprise pregnancy brought hope and joy.  This joy was short lived. Ann was to suffer with extreme postnatal depression (PND) which resulted her having electro convulsive therapy (ECT) at an adult psychiatric unit. Upon leaving the hospital Ann was to face a life changing tragedy, this is her story.

My story goes back a fair amount of time as my son is 26 this year, but a lot of it is still so vivid in my mind.  The depression has never really gone away. I don’t take any medication at the moment but I compare my depressive illness to having a monkey sitting on my shoulder, every now and then he taps me on my shoulder to remind me he is always there. He can mess up my world at any time, as he has done many times since my postnatal illness.

From my early twenties I was plagued with endometriosis, having had numerous tests & hormone treatments, I was told I may not conceive naturally and I may need IVF.

When I met Ray, there was an instant chemistry and our relationship developed at quite a fast pace. After a couple of months we were talking about our future.  I told Ray that I possibly wouldn’t be able to have children so if it was something that was really important to him, then maybe I wasn’t “the one”. We decided we would leave it in the hands of fate.

Around four months later I started to feel different, I did a pregnancy test but it was negative, I put the idea out of my mind. A few months after this, I was booked in for a laparoscopy so decided to do a pregnancy test just in case.

PND
Our wedding day (1994)

On May 5th I quickly did a test before I left for work only to discover that I was actually pregnant!!! When Ray returned home from work I told him our news!

We were both delighted, we wanted to start telling close family but at this point I had no idea “how pregnant” I was!!
I saw my GP the following day who confirmed I was around 14 weeks!!!!!

I don’t think I’ve ever felt so happy, I couldn’t believe we were having this much wanted baby.

I didn’t have the most straightforward pregnancy, the baby was lying transverse and causing a few issues with blood returning to my heart, once he turned it all resolved. Elis was an extremely mobile baby in utero and in the latter weeks of my pregnancy he was cephalic, then breech and this altering of position continued right up until 38 weeks when he decided to stay breech.

My obstetrician told me there was absolutely no reason why I could not deliver this baby naturally, so a C-section was not offered. Being a first time mum, I took him at his word but it was a big mistake!

I was in slow labour for a few days and after being told there was a risk of cord prolapse I made my way to the hospital as soon as I had a show.

On November 4th we set off for the labour ward. To shorten the story, after many hours of strong contractions every few minutes, but absolutely no progression of a dilated cervix (I have since understood why!!) I was started on a drip to help things along. Two epidurals later and a few more hours of labour I asked Ray to get the midwife, I could feel the baby coming!!

The midwife didn’t believe the baby was on its way. After me insisting the baby was, she decided to have a look. Before I knew it there was a mad panic to get me into stirrups. The baby was crowning, buttocks first!

I had an extensive episiotomy and Elis’ head was delivered by forceps. Due to the rush and incompetence of the midwife getting me into position for delivery, my epidural had been pulled out & I finally delivered on gas & air.

Despite a traumatic delivery and many stitches, I couldn’t have been happier. Our baby was beautiful, we named him Elis Wyn. He weighed 7lbs. I left hospital 4 days later, I was breastfeeding successfully and Ray was an incredible Dad who took to his new role like a duck to water, everything seemed perfect – for now.

I will admit, I am a bit of a perfectionist and I think I put way too much pressure on myself to be the “perfect Mum”. I would be up, showered, dressed etc & out walking with Elis in the pram by 9.30-10am. When Elis slept, I tidied up and kept everything organised.

As the weeks went by I realised I was eating a lot less, I was tearful and Elis started to demand feeding on the hour every hour. I realise now, that the poor thing was hungry as you cannot feed a baby when you’re not eating yourself. As a result of not eating, I became more and more tired. After almost 4 weeks I asked Ray to get formula milk.

The formula milk seemed to work, Elis was sleeping through the night at 4 weeks old but all was not well with me, I was not coping. My health visitor called to see me when Elis was 6 weeks old. I told her I couldn’t eat or sleep. I was crying most of the time, I didn’t like my baby. She patted the back of my hand and said, ‘it’s just the baby blues dear, nothing to worry yourself about” I therefore thought this was part of being a new mum but in fact it was the start of the decline of my mental health. I’m still angry to this day that the warning signs were not acted upon.

I went back to my job, (part time)  as a nurse when Elis was 7 weeks old as my maternity leave had finished (I didn’t want to take sick leave – stupid I know) I was working in an elderly care unit, the work was hard with lots of heavy lifting. My back was suffering so in May 1994, I was fortunate to get a job working on the coronary care unit (full time) at our local hospital.

My friend became our childminder and we plodded on. Not long after, I developed terrible headaches and in June, I went to see my GP. I explained what was wrong, he noticed I’d lost a fair bit of weight and suggested there may be more to this than a headache at which point I started crying & didn’t stop. I was diagnosed with postnatal depression (PND) and started on treatment. Elis was now 7 months old. I went to see my boss to explain what had happened and she told me to take sick leave. I said I just needed a week to get used to the tablets so took a week’s annual leave.

I became an expert in acting. No-one knew how I was actually feeling, not even my husband and close family. I hid it all from them and carried on working. I have no idea how, but I do know how exhausting that was and after a few months I admitted I needed some time off work.

I had regular appointments with the psychiatrist and was tried on different treatments. Again I went back to work & as far as everyone was concerned I was ok. I appeared to be functioning well both in work and at home but the reality was very different.

I don’t know whether it’s because there was such a stigma attached to mental health issues, or whether it was because I felt like a complete and utter failure as a mother that made me try to hide it all – it was probably a combination of the two.

One of my colleagues said (a long time afterwards) that the only thing she had ever picked up on was the fact that I always referred to Elis as “the baby” and never by his name. Other than that she wouldn’t have known how unwell I was. I kept up this act or facade in front of everyone.

It was a Monday in April 1995, I had an appointment with the psychiatrist. I went in and just fell apart, I told the truth about how I was really feeling. In view of the fact that I had by this time been tried on many different treatments, all of which were having little effect, he suggested I was admitted to the acute psychiatric unit for a course of electro convulsive therapy (ECT) I agreed to this, I was desperate.

This came as a shock to Ray and my family as they had no idea how ill I had become. I was admitted the following day and was assessed before starting my ECT. It was not the best environment for a mum with PND and there was absolutely no provision for my husband and son to visit outside of formal visiting times. It was hard to keep our family bond together.

Ray was absolutely incredible. He cared for Elis, carried on working and looked after the home. Ray was truly amazing and supportive thought the months I was in hospital. I didn’t find the staff very supportive, one or two of them would sit and chat but I was mostly just left alone.

I remember my first ECT treatment, It went OK, I had a bit of a headache afterwards but after a sleep felt no adverse effects. Unfortunately this would change as the weeks went by. I had three sessions of ECT each week (12 in total) it didn’t help the depression at all!

I suffered with the common side effects of profound short term memory loss. It was so severe, that if I started talking to you, half way through my first sentence I would forget what I was talking about. Basic communication became almost impossible and I felt isolated in this hell hole. I was never sectioned whilst I was in so was free to leave the ward. I would walk to the unit where I worked to have a coffee with my colleagues, sometimes I would sit at the nursing station for hours as I had no concept of time. The news that I was in the psychiatric unit spread like wild fire through the hospital too!!!

During my stay I attended occupational therapy and did crafts. I also started counselling while I was in and this continued after discharge.  Counselling turned out to be one of the most beneficial things.

There were many issues on the ward, some related to staff members, some due to the fact that on numerous occasions I was locked in a ward that should not have been locked!! The staff’s way of dealing with one unruly patient was not to deal with them, but to lock us all in.

Despite not being sectioned, I was on one to one nursing as I was deemed to be at high risk of suicide. I don’t recall threatening to kill myself but said I just couldn’t do this any more. The ECT had not helped the depression, it had rendered me useless and unable to hold a conversation.

I didn’t believe my short term memory would ever recover and thought this was how life would always be. I did contemplate suicide many times as I felt a complete failure and an utter burden to my family. I firmly believed that they would be far better off without me – but sitting here writing this is proof that I’m still very much alive!!

I finally left hospital in June and was to be followed up in clinic with regular visits from a community psychiatric nurse (CPN). Initially that didn’t happen and I was unsupported for the first 3 weeks after discharge.

My mum wasn’t happy with the overall care I had received on the ward or since being home and wrote a letter of complaint. I wasn’t happy with my consultant and requested to change to another. In August of that year I saw my new consultant for the first time. Ray came with me for support. After a long consultation Dr Davies suggested I try taking Lithium and explained in cases of severe depression that had not responded to many other intervention this had been a very effective treatment. I was reluctant to go on Lithium therapy but at this point I was willing to try anything. Support at home improved immensely, I had nurses and occupational therapists from the community mental health team supporting me.

Well what a difference, after tweaking the dose of Lithium to get my blood levels right, within 6 weeks there was a marked improvement in my mental health. Dr Davies was very pleased with my progress, we would continue my current treatment for at least a year. The plan was to continue counselling and see him every 2-3 months. I had to have my lithium levels checked regularly too.

He said if I remained well after a year he would then start to wean me off the medication I was on. I was delighted as was Ray & my family.

Despite me not liking my baby, not coping with motherhood and at my darkest times wishing every morning when I woke that my baby could be a cot death baby (this would have taken away the problem and no one would have blamed me if that had happened) one of the things to survive all of this was the bond from Elis to me which was incredible in the circumstances.

Things were going well, Ray and I bought a new home and we had loads of things planned. My short term memory had improved greatly and I had started back at work. My mental health continued to improve and in August 1996 I saw Dr Davies who was delighted with my continued health. The decision to start reducing my meds was taken. We were so happy that this horrific episode in our lives was over.

I had been told that in view of the severity of my depression, it was likely it would happen if I had another child. I told Ray I couldn’t go through it again and he supported me. The fear of getting pregnant had a negative effect on our relationship and so after much pleading with the gynaecologist, he agreed to sterilise me at the age of 31. Things improved after that & everything was good again & our family unit was a happy one.

On Wednesday, January 8th 1997, the day started like any other (although we were running a little late so Ray left for work without our usual goodbye kiss) I took Elis to nursery as I was on a study morning. I would collect him from the childminder after lunch.

We got home early afternoon. Elis was happily playing and I was pottering around the house when the phone rang. It was Ray’s boss who told me that he had fainted at work and had been taken to our local hospital. He suggested I make my way there as Ray would be in A&E by now. I thanked him and put the phone down.

I told Elis that Daddy had had a ride in a big ambulance and that we had to go to the hospital to fetch him. Elis being only just 3 years old thought Ray had had the biggest adventure. We got our coats on, got into the car & made our way to A&E. When we arrived I explained why I was there and we were asked to wait in the relatives area.

A few minutes later the A&E sister and on call doctor, who I knew well, walked towards me with a look on their faces that made me realise that it was worse than a simple faint. Every scenario went through my head in the 30 seconds it took them to get to where Elis and I were sitting. Had he had a brain haemorrhage, a stroke, a terrible accident? Whatever had happened and however badly he was hurt or left disabled in some way we’d deal with it. The one scenario that didn’t go through my mind was the one I was faced with.

Ray had collapsed in work, he’d sustained a cardiac arrest and all attempts to resuscitate him had failed. He was dead at just 30 years old. My world was collapsing around me, my rock who had seen me through the darkest times of my life was gone. Who would be my rock now and who would get me through this??

Supportive dad PND
Ray

Ray’s postmortem showed he had hypertrophic cardiomyopathy, an inherited heart condition that caused the heart muscle to overgrow, become thickened and ineffective.  Ray was a very fit young man who played rugby, squash and went running regularly. He didn’t smoke or drink and had no symptoms of this condition but for many months I beat myself up mentally. Being a cardiology nurse, I should have picked up on something, but the reality is there was nothing to notice so this couldn’t have been diagnosed.

As a result of this my mental health suffered and my medication was increased to where it had been the August before. I once more felt that life was not worth living and now resented Elis. If it wasn’t for the fact that I had to stay alive to look after him, I could take a bottle of pills, go to sleep and never wake up.

The feelings of guilt were immense, how could I feel like this when he had just lost his Dad? Elis reacted to his father’s death badly and had to be referred to a child bereavement service called Winston’s Wish. This made a huge difference to him and he once again became a happy young boy. Thankfully our bond also grew stronger as time went by and I felt at last like a proper Mum, not a failure.

So where are we now? I’m now 54 and happily married. I became a cardiology Sister, running my own unit but through ill health at the age of 49 was forced to retire – I have fibromyalgia and widespread arthritis.

Elis is 25 years old and unfortunately like his dad, has inherited hypertrophic cardiomyopathy. Elis recently had an internal defibrillator implanted to keep him safe in the event of a cardiac arrest .He has an amazingly supportive girlfriend who has supported him throughout his diagnosis and surgery, they are currently buying their first home.

Ray is still loved, remembered and talked about frequently. We fundraise for a charity called Cardiomyopathy UK
and run a local support group. Elis has done really well, he has gained a degree in psychology and criminology. Has a masters in criminology and criminal justice, he now works in the major crimes unit at South Wales Police (not as an active police officer as his heart condition prevents this) So life is good, I still have that monkey sitting on my shoulder but for now at least he is quiet and not bothering me.

life after PND

 

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